Hi Bethanyannie,

A very warm welcome to our forum. I am sorry that you now find yourself a candidate for a double mastectomy. You will find that most people have a single mastectomy, but the numbers for bilateral mastectomies are much smaller.

I had a lumpectomy in 2010, but developed a second bout of primary breast cancer a year later. This time I had a double mastectomy. My breasts were a size 44C, so it was quite a change to go flat. I was given a 'softie' to pop in my bra before I left hospital. I wore these until I healed up completely and was measured for a pair of silicone prostheses. Are you planning to have implants, or are you planning on just relying on your prostheses?

I was not a candidate for implants, as a result of previous non-cancer related surgery. I found the silicone prostheses very heavy initially. These have become lighter over the years, but are still quite heavy. I work with an assortment of different prostheses for different purposes. I have had an interesting time finding out what is best for particular purposes and, had a couple of embarrassing moments along the way, but I'm fairly sorted now.

Because I've had the two surgeries my right breast has a channel going through the middle of it. It looks a bit odd, but it doesn't show through clothing, because my prosthesis is on top of it. One of the nurses at the Haven did some myofascial release on the scarring and, this has made it look a lot better than it did at first. The other breast is fine - flat and no scarring.

Are you prepared for hospital? You will find it helpful if you have nightwear that opens at the front. It can be a bit sore to lift clothes over your head to start with and, is helpful for when doctors and nurses are examining you. It will also be helpful to have a small heart shaped cushion to pop under your arm when sleeping. I bought two, but only needed one, as I could only use one at a time. Check beforehand that your hospital provide bags for your drains. These are so much handier than struggling with two drip stands. If it doesn't, it is easy enough to make two simple open-top shoulder strap bags to hold your drains.

You may find that you are very tired. Don't try to fight this. Give in to it and have a snooze any time you feel overwhelmed by exhaustion. You will be given some exercises to do post-surgery. Do these religiously to get movement back as quick as you can. I have developed bilateral Lymphoedema, despite doing them regular as clockwork. Fortunately, not everyone gets lymphoedema, but it is more likely to occur when you fail to do the exercises.

Do please keep in touch and let us know how you get on with your surgery. If you have any further questions, I am always here.

I hope that it all goes well.

Kind regards,

Jolamine xx

Thank you so much for all the info! Especially the heart-shaped pillows, it's not something I'd thought of even though I have had breast surgery before, sleeping was very uncomfortable (as was washing my hair).

You're very brave, managing all you're going through.

I'm considering going flat, no implants, no prothesis, I know it's a strange choice to make and I'm not sure it's the right one, I have yet to hear what I'm offered as nothing can be processed until the (very rare and complicated) infection is no longer so dangerous, if it doesn't it may become an emergency but I have been warned that, either way, the outcome will be disfiguring. I'm not sure I could have implants as my breasts never formed correctly and damaged my chest muscles, and I worry that a prothethis might give me a lack of confidence with the change in my body (a bit like how my sister feels awkward if she's seen without her makeup).

The most I might ask for is nipple reconstruciton so being flat may look a little more natural as the scars flatten, what do you think of this?

Thank you so much for your excellent advice!

Hi there ...

Just thought I'd add my bit to the amazing jolomine ... she got me through my masectomy.... my angel .. 

I had a grade 3 breast cancer in July 2017 ... I plumbed for total right masectomy.... I was really scared I'd feel deformed and wondered how I'd cope ... but didn't want the chance of leaving any cancer behind ..  the total masectomy wasn't half as painful as I'd thought .. and yes my heart shaped cushion was a god send ...  as under arm where lymph nodes are taken was very tender ...  apparently it's less painful then a partial masectomy...

When I looked down for the first time ... honestly ... all I felt was relief ... I'm now proud of my scar ... it's the story of my journey... and I look at it now, as they took my boob but gave me something far more precious... time ... so I have one 36 DD  and one flat ... and I'm o.k with that ... it's just how you look at it .. though I know if I'd been young , I'd have been devastated...  

Even my little granddaughter in pic .. puts a little pillow up her jumper and says she's got one boob like nanny ...  though I bet her school news letter would be a smile and a half about it .... 

Just get that alian out of your body .. it wasn't invited, now it's time to go ... and remember what ever you decide done look back with regret ... let us know how you go ... you'll get lots of support on here ... Chrissie  xx 

Hi Bethanyanne,

Sleeping will be uncomfortable with for starters, but it does settle down quite quickly. washing your hair can also be difficult to start with. No, I am not brave at all. I am in the fortunate position to have had this for 10 years and, have had more than enough time to get used to this. If going flat is your choice then that is fine. I often go flat when I'm at home, but usually wear a prosthesis when I'm out.

You don't have to decide whether or not you want to go flat just now. You will be offered a prosthesis after you heal from your surgery. You can accept this and then try both ways - with and without a prosthesis, before you decide which way you feel better. I feel that because my breasts were so big before surgery, that am better with my prostheses when dressed up, or swimming.

Chriss is quite right. I too found that I healed up quicker after my double mastectomy than I did after my lumpectomy. I didn't bother with a nipple reconstruction, because some prostheses have a built in nipple. Some don't, but it's not that obvious in clothing. If you are going to have your's reconstructed that's fine, but remember that if you are going to wear a prosthesis this will cover your new nipple. Besides, if you have the mastectomy now, you can always opt to have the nipple done later on if you miss it.

I think that you may find the opposite to what you're expecting post-surgery. I found that my confidence took a big hit immediately after surgery and, things improved dramatically when I got decent shaped prostheses. You may feel different. Hopefully some others who have had a mastectomy may come along to give you their opinions.

I sincerely hope that your infection settles soon. Are you currently taking antibiotics for this?

Keep in touch.

Kind regards,
Jolamine xx

Thank you for sharing your story! So inspiring! I am so happy you found your confidence and can teach your granddaughter to have that confidence too.

It's really interesting to hear about the pain side of things, my last breast surgery was tender but not agony, I was wondering how a mastectomy would feel, espeically as my lymph nodes are so swollen right now I just want to cry all the time and can no longer bear to wear a bra.

Thank you!

Thanks for the advice, my confidence is something I'm worried about especially as I'm not left with much of it right now, not since my infection got so bad and actually caused me to faint yesterday (and about 12 times last year). My lymph nodes are swollen as are both breasts. I can't bare to look at them they're so scarred. Finally on antibiotics and fucidin for two weeks but I've been told I'll need a stronger treatment for 12-24 months to get the worst of the infection out of my body, just waiting to see the professionals.

The option for future nipple reconstruction is not something I'd thought of, me being me I was thinking everything had to be decided in one go, oops!

Hi Bethanyannie,

Your confidence will take a hit at first, but you will wake up one day and think "hey I've got rid of it", and just think what a fantastic feeling that will be. Like Chrissie, I now look at my scars with pride. I've got rid of all the cancer I could and, I'm still here 10 years later - they're like battle scars!

I believe that if surgery and reconstruction are done together, your own nipple can sometimes be saved, but if not, it can always be tattooed on later. I'm glad to hear that you are using antibiotics and Fucidin to try and curb the infection. The hospital will often supply stronger antibiotics to settle the infection. If you are fainting with the pain, it certainly sounds as if you may need something stronger. If the pain is that bad, don't hesitate to return to your GP, if the pain is no better. Antibiotics usually take about 4 days to start working. If you explain your situation to the receptionist she will usually fit you in as an emergency appointment.

Have you been given any indication of when you are likely to be seen at the breast clinic? You are usually seen within 2 weeks from referral. It is always a good idea to write down any questions before you go to see the consultant and, also to take someone with you to your appointments. I usually print out 2 copies of my questions and give 1 to my hubby. While I am asking the questions, he writes down the answers, as it is all too easy to forget what was said in consultation as soon as you close the door. There are different options for breast and nipple reconstruction, so you are as well knowing all of your choices before you go ahead with surgery.

I hope that you get seen soon and, that the pain begins to settle.

Kind regards,

Jolamine xx

Keeping notes at the appointment is such a great idea! I usually take another person with me and we struggle to remember what was said, I'll definetly start taking a notebook. Thank's so much for that advice!

I have to see Dermatology before the breast clinic because my infection is so aggressive and complicated it has to be treated before anything else can be safely considered, especially now my blood pressure, heart and rib cartilage is involved, otherwise the breast clinic will just send me back to Dermatology with a letter that they'll reschedule when I've been treated. I'm seeing Dermatology in a week. They also have to make sure my constant fainting and collapsing is definetly because of the infection, they don't want to offer surgery if it turns out to be a seperate matter, it's all very complicated because of my connective tissue disease, they need to find out what's auto-immune, what's infection and what to do about it.

Hi Bethanyannie,

Seeing a dermatologist first is a good idea. There is usually a long wait for this, so I'm glad to hear that you have an appointment in a week.

You sound a bit like me in that you don't do anything straightforward medically. It is so hard to work out what is responsible for each symptom. I know that you had bother with fainting last year too. Were you prone to fainting before, or is this something new for you?

Don't forget to let us know how you get on at dermatology. I sincerely hope that it all goes well.
Kind regards,

Jolamine xx

Sorry for the late reply, life happened

Yes, I am a very complicated case! I have connective tissue disease made up of fibromyalgia, arthritis, raynauds syndrome, urticaria and an undiagnosed autoimmune disease which is why I can't fight infection.

My fainting began because of low blood pressure in May of 2019, the month after my seizures stopped (side effect of methotrexate), apparently I was screaming while unconscious and when I came around I had terrible chest and neck pains. This seems to happen every time the infection gets bad.

I had my heart tested, despite tachycardia the Dr's said my heart was fine, but today I had a letter rushing me an appointment with cardiology, I'm really nervous , I wasnt expecting it! I'm practically digging my grave with worry